Thursday, December 12, 2013

like my mother always used to tell me.............

if it wasn't for bad luck, i wouldn't have any.

according to today's visit to the oncologist, the chemo is not working. not with the tamoxifen, not without the tamoxifen. he's not sure it really ever worked, even though there were some early signs that maybe it was.

on the other hand, the cancer appears to be a very slow growing one - a couple of spots are only a tiny bit larger (not even measured in the scan, just a tiny bit larger) while others are unchanged.

according to him, i have a 'very low cancer load' (meaning nothing big, just a bunch of really little spots) - which is why i'm not sicker, considering the diagnosis. he says they aren't doing any pet scans because nothing is even big enough to show up on a PET (things smaller than 1cm generally don't react in a pet scan). currently, there is no sign that the cancer has spread to my liver, or to my bones. we haven't done a brain scan in a year, but the likelihood of it having spread to my brain at this point is very small (though i understand that if you survive stage IV lung cancer lung enough, you WILL end up with brain mets at some point)

so we're taking 2 possible approaches and exploring them both:

the first is to take another look and see if i have either of the likely mutations - ALK or EGFR - apparently, 2 years ago when i had the initial surgery, they didn't automatically do the test for the mutations - if it had been a year ago, they would have done it automatically. if it's one of the mutants, then we treat for the mutant. there are established treatments for each of them. my doctor has (or is going to) put in the order for the testing.

the other is a newer treatment called a PD-1 inhibitor. one of the other oncologists in my oncology group has been doing this - he did it at Yale, and he's been doing it up at the mayo clinic in rochester mn. my doctor has (or is going to) talk to the new doctor about this one. i might have to take a trip up to mayo to meet with the tumor board/cancer board/whatever it is and see if that looks likely (my doctor thinks its very likely, he's been talking about this one for a month)

and my doctor is retiring in 22 days, so i have to be switched to a different oncologist anyway.

so for the moment, i wait. i don't have to renew/keep taking the tamoxifen. i do not have weekly chemo tomorrow, which will give my system another week, at least, to recover from the 19 i already had. my doc says if i haven't heard from him by noon-ish tomorrow, i should call him. it's a toss up who's more disappointed tonight, me or him.